"一个非常非常几乎不可能的旅程"儿童癌症影响家庭的感知需求和挑战:定性分析
Emma Delemere1, Isaiah Gitonga1, Rebecca Maguire1
1Department of Psychology, Maynooth University Co., Kildare, Ireland.
Comprehensive child and adolescent nursing
|July 6, 2023
概括
患有癌症的孩子的家庭面临着巨大的负担. 医疗保健专业人员 (HCP) 经常认识到这些挑战,突出需要更好的社区服务,系统连接和儿童癌症家庭可访问的心理支持.
科学领域:
- 儿科瘤学 儿科瘤学
- 家庭支持服务 家庭支持服务
- 医疗保健系统导航 导航
背景情况:
- 照顾患有癌症的孩子给家庭带来了巨大的负担.
- 医疗保健专业人员 (HCP) 和辅助人员对这些负担的认识尚未得到充分理解.
研究的目的:
- 探索爱尔兰儿童癌症影响家庭的需求和挑战.
- 从父母和支持人员的角度了解这些问题.
主要方法:
- 对21名参与者进行了深入的半结构化采访 (7名家长,14名支持人员,包括医疗人员和志愿者).
- 采访发生在2020年12月至2021年4月期间.
- 采用反射的主题分析方法.
主要成果:
- 发现的关键挑战包括"新常态"的导航,治疗的"浪潮"和"依赖他人".
- 家庭需要加强社区服务提供,改善医疗保健系统连接,以及更容易获得的心理支持.
- 在家长和支持人员 (特别是医疗人员) 的观点之间观察到显著的主题重叠.
结论:
- 儿童癌症严重影响家庭,带来多方面的挑战.
- 医务人员表现出对家庭需求的认识,表明他们有潜力在父母的观点有限时提供见解.
- 调查结果表明,改善儿童癌症的家庭支持服务的关键领域.
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